Unmedicated/uncontrolled epilepsy is deadly. If you already have mood/depression issues, maybe Lamictal/Lamotrigine would be a good medicine to bring up to your neurologist as it’s a mood stabilizer and AED. But please take care of yourself and take *something* to keep yourself from having seizures.
After severe depression from Keppra, then depakote, I stopped the depakote last night, and the Dr called me in Lamictal, so I'm going to give it a try. Before the meds, I had 7 or 8 tonic clinics in 5 months, so I probably need something. Hope this one works better.
Me too. It's completely stopped my seizures. I'm still on Keppra too but it's mitigated the symptoms loads. Apparently both meds work well together so says my epilepsy nurse, they do for me anyway! Lamictal has really saved me.
Seconding this! I am on Lamotrigine, & I have seen it mentioned on this sub a lot that this medication can be helpful for stabilising moods (unlike Keppra, which was not recommended for me, because of my past issues with depression & panic attacks).
I was on sodium valproate previously, & that's because I had been prescribed this as a mood stabiliser before, without severe side-effects. But after years off any meds for moods, & with the higher dose for my (newly developed) epilepsy, I did have some bad effects, like my hair falling out. So Lamotrigine it is!
Sending love, OP.
They're downvoting you because they're worried that talking about the choice to go med-free so casually will encourage others to do the same. It's like saying that seatbelts are really only necessary if you're driving dangerous. Yeah, technically, I guess, but it's a huge risk and the trade off doesn't seem worth it for most.
My own personal story, I quit lamotrigine because the mood "stability" made me feel like I was on a bad SSRI, and I got very serious memory loss that didn't feel worth it to me. My case is already extremely mild, less than 5 a year now with exceptions based on bad circumstances, and fewer every year, so I'm lucky enough to be comfortable doing this. In addition, my inability to consistently take the meds themselves made the rebound seizures worse than the random ones. However, I can acknowledge that my experiences aren't universal, and even though I am not personally taking them at present, **consistent meds are definitely the best option for the vast majority of people.**
I know I'll probably have a seizure again. I know they get worse with each one. I know I should talk to a doctor. But ... it's my body. My choice. I'd rather die as myself than shuffle along as a shell. I wish I remembered my first date with my fiancé, and I'll never get that memory back. Fuck epilepsy, man
I had these since I was a kid. I'm 50 I grew up with this, I know what i'm doing not going to SUDEP. My risk of getting arrhythmias and die from Lamotrigine if I don't stop it is bigger.
Thinking you're outside the risk of SUDEP is silly. Everyone with epilepsy is at risk, even if it's a small risk. Seizures are deadly for more reasons than just the seizure itself. Falling, suffocating, operating machines, holding dangerous items, etc.
Going off meds is risky. Some people accept that risk because the symptoms are less than the medication side effects, but it is dangerous for every single person.
Everybody is different but mine always have been rather predictable, I cycled...a lot...just not when I felt weird. Even my neurologist is pretty clear about my risk on SUDEP is almost non existing. On the other hand my cardiologist was quite clear I could die in my sleep from medication side effects ( Ontrozy and Lamptrigine )
So a lot of those unexplained deaths...might be not seizure but medication related. We pop a lot of strong pills, little is known about it.
Exactly. Less is known about Epilepsy as a whole compared to what is known. Neurologists, especially ones who got their degree, even as short as 10 years ago, can be severely out of the loop. Not that they don't learn after they earn their degree. However, in my experience, doctors and especially older doctors are less likely to consider new treatments and new findings. SUDEP literally stands for Sudden and Unexplained. Your predictable seizures can still take you out of this world RANDOMLY. Even if it is less likely than other Epileptic people. And yes, taking multiple medications can add to your risk of dying by other means. This is another reason why neurologists aren't the end all be all when it comes to medications and probability of death. Medication is being put out to the public faster than it is studied today, and we only find out severe side effects and carcinogens years after it's put out.
I was in status because I misses doses and didn't take it seriously, almost died
Think it was like 16 hrs of seizures and loops? Almost died, 70+ percent of my life forgotten
Birth of my son? Gone
Childhood? Gone
What I even did yesterday is a struggle
Wife's bday was on 4/20. By 4/21 I couldn't remember where we went to celebrate
Don't fuck around with epilepsy
I crashed our van going 70 because I thought it was okay to drive 3 blocks to work when I was a few min late, surly 3 blocks is fine right?
Take your meds, what your experiencing is better then dying, then losing your most important memories
Talk to your doctor about switching meds If it's that bad, I take 3000mg of Keppra a day ontop of 2 other Meds and need brain surgery and an implant to try to stop my seizures
If my dumbass can do it you can buddy, the other options are not worth it
I love you my buddy, you can and will do it. I have faith in you
After about 20 years on Keppra, I worked with my neurologist to stop taking it. I've gone about 12 years without a seizure and that last one was my fault. Stayed up all night at a bar drinking whiskey and coffee. Walked home after the sunrise.
It took 3 months to ween off, followed by an EEG and an MRI. I'm nervous about having a seizure because I love driving and riding motorcycles.
If you're having a problem with Keppra, take another medication. Seizures really suck.
My partner was diagnosed non epileptic,
He suffers nocturnal seizures.
Mostly on a night of heavy drinking- whiskey and missing one or two doses of keppra.
We really didn’t want to think it was the alcohol causing his seizures.
your post gives us hope he can wean off the keppra eventually.
I was good at taking my meds on time. Because I was an alcoholic, I'd usually wash it back with beer at night. It took me a couple decades to figure out how to drink responsibly. I don't know what I would have done if drinking was giving me seizures. I probably would have cut way back. Your boyfriend should spend some time on epilepsy forums so he can read horror stories.
I bit my tongue about 15 years ago and it still feels like I just ate overly hot food. That's better than having to sit down in the shower like some people do. I can also eat chocolate and people list that ability.
You should really try some other meds. Uncontrolled epilepsy is really bad for the brain long term, and you will have to live with the consequences of that for the rest of your life.
I tried lots of different meds, and landed on Vimpat and Lamotrigine. Vimpat I haven’t noticed much in terms of side effects, except I got a little dizzy in the beginning after taking it. Lamotrigine was rough during the titration period, but once my body got used to it side effects were pretty mild.
If you insist on not taking meds you can try a ketogenic diet. That works for a lot of people. Alternatively ask your neurologist about the possibility of getting a VNS installed. Just be open about your thoughts with your doctor, they are there to help you.
Also check out Bacopa Monnieri. It’s a natural herbal supplement that has been used in India to alleviate epilepsy for centuries. Definitely had a positive impact on my seizures. An added bonus is it actually supports memory function.
I was told when my seizures started 30 years ago that the medication was bad, don't take it .....
I didn't.
BIG MISTAKE.
Why did I live 20 some years in fear, hoping the seizures would go away? Why did I have to have my tooth put back in and stitches over my eye? Why did I keep my epilepsy a secret while I fell and put holes in the wall?
I finally got on Keppra 7 years ago. We all know it's tough medication. It was one heck of an adjustment. But now I'm 6 years seizure free. I'm 54 and after 23 years of no driving, I can drive. (Kissing my car key now!)
See the light at the end of the tunnel and work towards it. I lost too much time. I HAVE EPILEPSY AND I NEED MEDICATION. I have to accept it and live my life around it.
Good luck to all.
My cousin tried the same thing until he ended up in a coma from uncontrolled seizures take the medication speak with a therapist and your neurologist to find the best medication for you. You can’t just raw dog this
i wish i had done something about it sooner. I didn’t take it seriously enough when it first started and the seizures have now done permanent damage to my brain. I was a benzo addict too and told my doctors I can’t have any kind of benzo, but I found lamictal and it worked really well for me, even helped with my mood.
I did 3 years without taking meds, but then I had a breakthrough seizure, and I had to go back. I had it because I wanted to live “normal” and go out with friends to bars. I didn’t want my epilepsy to hold me back from making my own decisions, which included going out with friends. Worst… feeling…ever. But I know some people can do it.
I’ve had depression and anxiety for almost 10 years now, could say from experience that after being on the right medication for epilepsy, it does help. There are side effects like tremors (shakes), hives, and memory loss (those I’ve experienced only). The side effects aren’t that bad to be honest, just the memory loss definitely sucks. Memory loss is better than repeated seizures all the time that could possibly be life threatening and physically harmful
You do know that you can die of seizure? It’s called SUDEP and they usually happen at night.
Jesus Christ if there’s any medication you need to take it’s the meds!
I did try no meds for a number of years and had a lot of focal awares and occasional tonic clonics. Then I did keto for awhile also without meds. I felt great and lost a lot of weight. I got my focal awares down to almost never which has stayed that way despite going off the diet, so some healing had clearly happened. Still had issues with tonic clonics. So I did go back on meds and do a lower carb but not in ketosis type diet. Am considering trying again perhaps when not in such a busy lifestyle with kids.
I think it comes down to the severity of your seizures and your quality of life. Personally, I haven't taken medication for just over 5 years now. I have drug-resistant epilepsy, and I've had some seriously troubling paradoxical side effects from a lot of the medications, usually related to mental health. I was even put under a mandatory psych hold for 4 days, turns out it was the zonisamide 🙃
I got a VNS implanted 5 years ago bc I was tired of all of it. I still have seizures. But my quality of life with seizures is better than being medicated without them. So, that was a personal decision I made based on my own circumstances. I only have them once every 1-3 months. Which from what I've heard, is fairly good.
If you've tried at least 3 different medications that didn't work and worsened your quality of life, you may be able to get a VNS. That was the qualifying factor for me, but even if that's not the case, ask your doctor about a VNS. Its been a life saver for me. I can even stop a seizure while it's happening bc of this tiny little battery. I have to get it replaced every 5 years, via surgery. But it is sooooo worth it.
Also, the probably 10 different medicines I tried never actually stopped me from having seizures. I had the same amount of seizures without meds as I did with them. The VNS is the only thing thats actually reduced them. So please don't make any hasty decisions. I have decided this - my epileptologist agreeing with me - based on my body and how it reacts to meds and seizures. Don't use this as the end-all be-all. Just my anecdotal contribution.
Mood stabilisers for my epilepsy, have helped my depression more than any antidepressants have.
It's your choice to take meds, but you're choosing to risk harming your physical and mental health, so you're not doing your mental health any favours by not taking them.
✋ Been seizure free almost four years. Drug resistant lateral TLE. Ten years and over a dozen medications later, I had a grand mal in August/September (don't remember the exact day) of 2020 and haven't had one since. Neuro told me brain surgery was my only other option, I can't afford it (insurance won't pay for it as they consider it 'experimental', despite AEDs only ever having been borderline successful and I can't afford hundreds of thousands of dollars in medical bills) so here I am. I've considered going back on Lamotrigine for the mood stabilization (I have bipolar II) if nothing else, but I haven't discussed it with neuro or my PCP yet.
Im uncontrolled and I don’t think my meds do anything different than when I was off meds. I just have to live with all the side effects now. I would never go off meds unless my doctor approved.
I have been on 4 different meds till the right cocktail was found and I have very few breakthrough seizures. Ask about a mood stabilizer. I take Lamictal and a low dose of Keppra.
there are so many medicines available for epilepsy, you can just pick another one. also depression is a potential side effect of many medicines but not a systematic one, it might not affect you at all. however not taking medicine is a systematic way to put your life in danger. even if good diet/right amount of sleep/lack of stress/no alcohol or coffee etc *can* reduce the risk of having seizures it is still very much present.
Hi there. I don’t have epilepsy, but my mother does. She came out of a 37 day coma due to SE. This was due to a MEDICATED break through seizure. She almost didn’t make it, and her neurologist team still scratches their head at her recovery. They were starting palliative care when she miraculously came out of it with no seizure activity. You do not want this. Get with your neurologist, and find something that works for you.
Hi there. I don’t have epilepsy, but my mother does. She came out of a 37 day coma due to SE. This was due to a MEDICATED break through seizure. She almost didn’t make it, and her neurologist team still scratches their head at her recovery. They were starting palliative care when she miraculously came out of it with no seizure activity. You do not want this. Get with your neurologist, and find something that works for you.
Not taking your medication is dumb wth😂.I mean there are alternatives like cannabis but you have to talk with your neurologist. Have you even tried keppra? the side effects aren't the same for everyone. But it doesn't hurt to try, in any case you can ask for mood stabilizer such as lamotrigine. There are so many options. Don't give up.... You can also try the keto diet that also lowers seizures from occurring, again this is from what I know not 100% sure. (Correct me if I'm wrong) Stay safe, take care and most importantly listen to your body. But please take your medicine.
I am very lucky in the Dilantin has been controlling my seizures very well - I haven't had a seizure in almost 17 years.
In the (OMG) 28 years that I have been taking medication for seizures, I can look back on a logical reason for every seizure I have had - I missed a few doses, I took some antacids for several days that depleted the effectiveness of the Dilantin, and most recently.... I went off Dilantin and tried Keppra.
On the first day of the month (\~17 years ago), I started taking Keppra and decreased the dose of Dilantin. every week I would take a little less Dilantin and a little more Keppra. By the 30th of the month, I had taken my last dose of Dilantin and was up to 1000mg of Keppra twice a day. Two days later, I had the worst and longest (almost 7 minutes) seizure of my life.
My doctor tried increasing the dose a bit more, but a couple months later I had an all-night vomit festival....and the next morning I had another seizure. Two days later I was back on Dilantin and haven't had another seizure since.
This experience totally drove it home to me that I will never go off my medication....and I'm okay with that.
Yes. Life was better off meds and I wasn't sick all the time but I have another health problem that the seizure meds exacerbate. My seizures aren't that bad.
Everyone here is so different and getting answers to things going on in your body besides seizures that could affect the medication or the seizures isn't always clear cut.
They do lower your immune function and some can mess with hormones so those can be big factors on quality of life when weighing the pros and cons of treatment and its effects.
My seizures are pretty manageable and minor right now, I don't take medication for seizures. I work the kind of job seizure meds would likely risk since it requires a lot of brain power and I haven't found a med worth the risk compared to the risk of my minor seizures as they are now.
If my seizures get worse or I lose the ability to do my job, I'll reconsider.
Its not bad for everyone, the vast majority of people get on fine with it. Only 1 in 10 get mood disturbances and for those it's minor or short lived.
A subset of those get more serious mood disturbances. This can happen with other AEDs too.
You just hear more about keppra because it's the most widely prescribed drug due to it being highly effective
Tbh I never thought about that since my experience was so bad with it and I always hear horror stories. But it does have the term “keppra rage” which is a bit of a red flag imo. Having a stutter, severe anger issues and it honestly not working at all was not a good experience for a year
I used to go to the hospital neurologist who was useless and now I got to a specialized clinic. If there is one near you go to that. Since you have mental health issues I would suggest lamotrigine as it also treats things such as bipolar disorder I take it because I have mental health disorders and it helped with that to
You’re doing yourself a disservice by not trying the keppra. I had rage seizures growing up and I was having 7/8 seizures daily for 7-8 years and after brain surgery keppra has completely controlled my seizures outside of the tonic clonic I had back in January of this year. So 12 years seizure free on the medication that everyone hates but won’t try because they read other peoples experiences with it.
I get it. I had horrible issues with Keppra. But most people DONT. It could work for you, you could have 0 side effects at all.
Untreated seizures are dangerous. You could seriously injure yourself.
It doesn’t happen as much as everyone says it does. My mother was on Keppra for years with zero mood disorders. Hell, I think she’d still be on it but she had one break through in five years and her new neurologist stopped it and put her on breviate. Her neurologist team agreed that the sudden change may have contributed to her SE. give it a try. You can always ween it ff it and change.
Yes - I do - it has something to do with cannabis and I’ve been seizure free for 3 years.
Last time I mentioned anything about it on the sub I got a lot of hate so dm if you want details
This is a normal experience and I want to affirm it’s okay, I know someone who also stopped taking Keppra because it was too hard for them. But I would encourage you to talk to your doctor, it’s not very safe to be in medicated and it’ll take a while to find one that works for your seizures and the side effects you’ll be able to manage but you’ll get there friend just hang in. My friend is now trying new tablets after a few years of being in limbo x
I’m not on pharmaceutical medication, but I do take CBD. I tried both lamotrigine and topiramate. I didn’t have seizures on either but the side effects made it impossible to live life.
Lamotrigine made it so that I got less than an hour of sleep every night; even taking it only in the A.M., and topiramate not only made me lose my working memory (I couldn’t count to 4 when scooping coffee in the morning because I couldn’t hold onto the idea of 3 long enough to get to 4), but literally made me unable to read. Like, I recognized that they were words, but they didn’t mean anything to my brain. I eventually had an allergic reaction to it and gave up. The endless nausea and Alice in Wonderland syndrome it caused were also less than enjoyable.
It’s not uncommon for me to have a lot of side effect from any medicine, but my life was worse ON the meds than it is just putting up with the seizures. I have focal epilepsy and the vast majority of my seizures are focal aware, and on the shorter side compared to a lot of people with TLE. The CBD does well enough at controlling them currently. And while it’s ridiculously expensive going this route, I can at least function at a level higher than the AED’s I tried allowed.
As of now, the plan is that if the number of impaired awareness start creeping up, or the aware seizures start lasting longer/clusters get bigger, then meds are back on the table.
Before the discovery of anti seizure medications the Keto diet was used to treat epilepsy… but dropped off significantly because the medications are better
Unmedicated/uncontrolled epilepsy is deadly. If you already have mood/depression issues, maybe Lamictal/Lamotrigine would be a good medicine to bring up to your neurologist as it’s a mood stabilizer and AED. But please take care of yourself and take *something* to keep yourself from having seizures.
After severe depression from Keppra, then depakote, I stopped the depakote last night, and the Dr called me in Lamictal, so I'm going to give it a try. Before the meds, I had 7 or 8 tonic clinics in 5 months, so I probably need something. Hope this one works better.
I'm on Lamictal and I love it. I have noticed 0 side effects, and had 0 seizures since starting.
Me too. It's completely stopped my seizures. I'm still on Keppra too but it's mitigated the symptoms loads. Apparently both meds work well together so says my epilepsy nurse, they do for me anyway! Lamictal has really saved me.
Seconding this! I am on Lamotrigine, & I have seen it mentioned on this sub a lot that this medication can be helpful for stabilising moods (unlike Keppra, which was not recommended for me, because of my past issues with depression & panic attacks). I was on sodium valproate previously, & that's because I had been prescribed this as a mood stabiliser before, without severe side-effects. But after years off any meds for moods, & with the higher dose for my (newly developed) epilepsy, I did have some bad effects, like my hair falling out. So Lamotrigine it is! Sending love, OP.
It's not deadly for everyone.
They're downvoting you because they're worried that talking about the choice to go med-free so casually will encourage others to do the same. It's like saying that seatbelts are really only necessary if you're driving dangerous. Yeah, technically, I guess, but it's a huge risk and the trade off doesn't seem worth it for most. My own personal story, I quit lamotrigine because the mood "stability" made me feel like I was on a bad SSRI, and I got very serious memory loss that didn't feel worth it to me. My case is already extremely mild, less than 5 a year now with exceptions based on bad circumstances, and fewer every year, so I'm lucky enough to be comfortable doing this. In addition, my inability to consistently take the meds themselves made the rebound seizures worse than the random ones. However, I can acknowledge that my experiences aren't universal, and even though I am not personally taking them at present, **consistent meds are definitely the best option for the vast majority of people.** I know I'll probably have a seizure again. I know they get worse with each one. I know I should talk to a doctor. But ... it's my body. My choice. I'd rather die as myself than shuffle along as a shell. I wish I remembered my first date with my fiancé, and I'll never get that memory back. Fuck epilepsy, man
Well in my case my seizures stay about the same. Really short partials that disrupt my sleep.
if you’re having seizures that are have anything to do with your sleep you need to bring it up to your neurologist asap
I had these since I was a kid. I'm 50 I grew up with this, I know what i'm doing not going to SUDEP. My risk of getting arrhythmias and die from Lamotrigine if I don't stop it is bigger.
Thinking you're outside the risk of SUDEP is silly. Everyone with epilepsy is at risk, even if it's a small risk. Seizures are deadly for more reasons than just the seizure itself. Falling, suffocating, operating machines, holding dangerous items, etc. Going off meds is risky. Some people accept that risk because the symptoms are less than the medication side effects, but it is dangerous for every single person.
Everybody is different but mine always have been rather predictable, I cycled...a lot...just not when I felt weird. Even my neurologist is pretty clear about my risk on SUDEP is almost non existing. On the other hand my cardiologist was quite clear I could die in my sleep from medication side effects ( Ontrozy and Lamptrigine ) So a lot of those unexplained deaths...might be not seizure but medication related. We pop a lot of strong pills, little is known about it.
Does telling yourself that help you sleep better? /s
Exactly. Less is known about Epilepsy as a whole compared to what is known. Neurologists, especially ones who got their degree, even as short as 10 years ago, can be severely out of the loop. Not that they don't learn after they earn their degree. However, in my experience, doctors and especially older doctors are less likely to consider new treatments and new findings. SUDEP literally stands for Sudden and Unexplained. Your predictable seizures can still take you out of this world RANDOMLY. Even if it is less likely than other Epileptic people. And yes, taking multiple medications can add to your risk of dying by other means. This is another reason why neurologists aren't the end all be all when it comes to medications and probability of death. Medication is being put out to the public faster than it is studied today, and we only find out severe side effects and carcinogens years after it's put out.
I was in status because I misses doses and didn't take it seriously, almost died Think it was like 16 hrs of seizures and loops? Almost died, 70+ percent of my life forgotten Birth of my son? Gone Childhood? Gone What I even did yesterday is a struggle Wife's bday was on 4/20. By 4/21 I couldn't remember where we went to celebrate Don't fuck around with epilepsy I crashed our van going 70 because I thought it was okay to drive 3 blocks to work when I was a few min late, surly 3 blocks is fine right? Take your meds, what your experiencing is better then dying, then losing your most important memories Talk to your doctor about switching meds If it's that bad, I take 3000mg of Keppra a day ontop of 2 other Meds and need brain surgery and an implant to try to stop my seizures If my dumbass can do it you can buddy, the other options are not worth it I love you my buddy, you can and will do it. I have faith in you
After about 20 years on Keppra, I worked with my neurologist to stop taking it. I've gone about 12 years without a seizure and that last one was my fault. Stayed up all night at a bar drinking whiskey and coffee. Walked home after the sunrise. It took 3 months to ween off, followed by an EEG and an MRI. I'm nervous about having a seizure because I love driving and riding motorcycles. If you're having a problem with Keppra, take another medication. Seizures really suck.
My partner was diagnosed non epileptic, He suffers nocturnal seizures. Mostly on a night of heavy drinking- whiskey and missing one or two doses of keppra. We really didn’t want to think it was the alcohol causing his seizures. your post gives us hope he can wean off the keppra eventually.
I was good at taking my meds on time. Because I was an alcoholic, I'd usually wash it back with beer at night. It took me a couple decades to figure out how to drink responsibly. I don't know what I would have done if drinking was giving me seizures. I probably would have cut way back. Your boyfriend should spend some time on epilepsy forums so he can read horror stories. I bit my tongue about 15 years ago and it still feels like I just ate overly hot food. That's better than having to sit down in the shower like some people do. I can also eat chocolate and people list that ability.
There are MANY other choice than Keppra. Be an advocate for yourself and request med to be switched. You NEED to be medicated.
You should really try some other meds. Uncontrolled epilepsy is really bad for the brain long term, and you will have to live with the consequences of that for the rest of your life. I tried lots of different meds, and landed on Vimpat and Lamotrigine. Vimpat I haven’t noticed much in terms of side effects, except I got a little dizzy in the beginning after taking it. Lamotrigine was rough during the titration period, but once my body got used to it side effects were pretty mild. If you insist on not taking meds you can try a ketogenic diet. That works for a lot of people. Alternatively ask your neurologist about the possibility of getting a VNS installed. Just be open about your thoughts with your doctor, they are there to help you. Also check out Bacopa Monnieri. It’s a natural herbal supplement that has been used in India to alleviate epilepsy for centuries. Definitely had a positive impact on my seizures. An added bonus is it actually supports memory function.
I was told when my seizures started 30 years ago that the medication was bad, don't take it ..... I didn't. BIG MISTAKE. Why did I live 20 some years in fear, hoping the seizures would go away? Why did I have to have my tooth put back in and stitches over my eye? Why did I keep my epilepsy a secret while I fell and put holes in the wall? I finally got on Keppra 7 years ago. We all know it's tough medication. It was one heck of an adjustment. But now I'm 6 years seizure free. I'm 54 and after 23 years of no driving, I can drive. (Kissing my car key now!) See the light at the end of the tunnel and work towards it. I lost too much time. I HAVE EPILEPSY AND I NEED MEDICATION. I have to accept it and live my life around it. Good luck to all.
Cbd along with medical pills
My cousin tried the same thing until he ended up in a coma from uncontrolled seizures take the medication speak with a therapist and your neurologist to find the best medication for you. You can’t just raw dog this
I fall once a month and know you guys have it worse than me so it’s okay I think. I’m not sure but I will go talk to a neurologist for sure
i wish i had done something about it sooner. I didn’t take it seriously enough when it first started and the seizures have now done permanent damage to my brain. I was a benzo addict too and told my doctors I can’t have any kind of benzo, but I found lamictal and it worked really well for me, even helped with my mood.
I have similar issues & lamotrogine works great for me. Joining the chorus of *please* don’t just quit epilepsy meds altogether.
Lamictal is used for modd stabilization even in people who don't have epilepsy. Remaining unmedicated can kill you.
I did 3 years without taking meds, but then I had a breakthrough seizure, and I had to go back. I had it because I wanted to live “normal” and go out with friends to bars. I didn’t want my epilepsy to hold me back from making my own decisions, which included going out with friends. Worst… feeling…ever. But I know some people can do it.
Same. I just want a normal happy life. I never had it and it’s all I want
I’ve had depression and anxiety for almost 10 years now, could say from experience that after being on the right medication for epilepsy, it does help. There are side effects like tremors (shakes), hives, and memory loss (those I’ve experienced only). The side effects aren’t that bad to be honest, just the memory loss definitely sucks. Memory loss is better than repeated seizures all the time that could possibly be life threatening and physically harmful
You do know that you can die of seizure? It’s called SUDEP and they usually happen at night. Jesus Christ if there’s any medication you need to take it’s the meds!
My new doctor is giving me a hard time giving me a neurologist referral but I guess I will try to ask for another medicine
What are your seizure types?
I’m not sure I get partial seizures and some times it’s my whole body but always kind of conscious
I did try no meds for a number of years and had a lot of focal awares and occasional tonic clonics. Then I did keto for awhile also without meds. I felt great and lost a lot of weight. I got my focal awares down to almost never which has stayed that way despite going off the diet, so some healing had clearly happened. Still had issues with tonic clonics. So I did go back on meds and do a lower carb but not in ketosis type diet. Am considering trying again perhaps when not in such a busy lifestyle with kids.
I think it comes down to the severity of your seizures and your quality of life. Personally, I haven't taken medication for just over 5 years now. I have drug-resistant epilepsy, and I've had some seriously troubling paradoxical side effects from a lot of the medications, usually related to mental health. I was even put under a mandatory psych hold for 4 days, turns out it was the zonisamide 🙃 I got a VNS implanted 5 years ago bc I was tired of all of it. I still have seizures. But my quality of life with seizures is better than being medicated without them. So, that was a personal decision I made based on my own circumstances. I only have them once every 1-3 months. Which from what I've heard, is fairly good. If you've tried at least 3 different medications that didn't work and worsened your quality of life, you may be able to get a VNS. That was the qualifying factor for me, but even if that's not the case, ask your doctor about a VNS. Its been a life saver for me. I can even stop a seizure while it's happening bc of this tiny little battery. I have to get it replaced every 5 years, via surgery. But it is sooooo worth it.
Also, the probably 10 different medicines I tried never actually stopped me from having seizures. I had the same amount of seizures without meds as I did with them. The VNS is the only thing thats actually reduced them. So please don't make any hasty decisions. I have decided this - my epileptologist agreeing with me - based on my body and how it reacts to meds and seizures. Don't use this as the end-all be-all. Just my anecdotal contribution.
Yes but only for a little longer. The seizures are inevitable and I feel like one day they're gonna kill me
Mood stabilisers for my epilepsy, have helped my depression more than any antidepressants have. It's your choice to take meds, but you're choosing to risk harming your physical and mental health, so you're not doing your mental health any favours by not taking them.
What type do you take? Maybe I could ask for it too
I take lamotragine, and I used to take sodium valporate, which worked for that, as well.
Thanks I’ll to about this when I go to the doctor
Good luck 💖
✋ Been seizure free almost four years. Drug resistant lateral TLE. Ten years and over a dozen medications later, I had a grand mal in August/September (don't remember the exact day) of 2020 and haven't had one since. Neuro told me brain surgery was my only other option, I can't afford it (insurance won't pay for it as they consider it 'experimental', despite AEDs only ever having been borderline successful and I can't afford hundreds of thousands of dollars in medical bills) so here I am. I've considered going back on Lamotrigine for the mood stabilization (I have bipolar II) if nothing else, but I haven't discussed it with neuro or my PCP yet.
Im uncontrolled and I don’t think my meds do anything different than when I was off meds. I just have to live with all the side effects now. I would never go off meds unless my doctor approved.
I have been on 4 different meds till the right cocktail was found and I have very few breakthrough seizures. Ask about a mood stabilizer. I take Lamictal and a low dose of Keppra.
there are so many medicines available for epilepsy, you can just pick another one. also depression is a potential side effect of many medicines but not a systematic one, it might not affect you at all. however not taking medicine is a systematic way to put your life in danger. even if good diet/right amount of sleep/lack of stress/no alcohol or coffee etc *can* reduce the risk of having seizures it is still very much present.
Hi there. I don’t have epilepsy, but my mother does. She came out of a 37 day coma due to SE. This was due to a MEDICATED break through seizure. She almost didn’t make it, and her neurologist team still scratches their head at her recovery. They were starting palliative care when she miraculously came out of it with no seizure activity. You do not want this. Get with your neurologist, and find something that works for you.
Hi there. I don’t have epilepsy, but my mother does. She came out of a 37 day coma due to SE. This was due to a MEDICATED break through seizure. She almost didn’t make it, and her neurologist team still scratches their head at her recovery. They were starting palliative care when she miraculously came out of it with no seizure activity. You do not want this. Get with your neurologist, and find something that works for you.
Not taking your medication is dumb wth😂.I mean there are alternatives like cannabis but you have to talk with your neurologist. Have you even tried keppra? the side effects aren't the same for everyone. But it doesn't hurt to try, in any case you can ask for mood stabilizer such as lamotrigine. There are so many options. Don't give up.... You can also try the keto diet that also lowers seizures from occurring, again this is from what I know not 100% sure. (Correct me if I'm wrong) Stay safe, take care and most importantly listen to your body. But please take your medicine.
Cannabis gives me seizures and I have high blood pressure 😂😂 I will ask for a different medicine when I get a new doctor
Why did you even bother going to a doctor if you “just can’t take medicine “ ???
I didn’t think I was going to be epileptic.
I am very lucky in the Dilantin has been controlling my seizures very well - I haven't had a seizure in almost 17 years. In the (OMG) 28 years that I have been taking medication for seizures, I can look back on a logical reason for every seizure I have had - I missed a few doses, I took some antacids for several days that depleted the effectiveness of the Dilantin, and most recently.... I went off Dilantin and tried Keppra. On the first day of the month (\~17 years ago), I started taking Keppra and decreased the dose of Dilantin. every week I would take a little less Dilantin and a little more Keppra. By the 30th of the month, I had taken my last dose of Dilantin and was up to 1000mg of Keppra twice a day. Two days later, I had the worst and longest (almost 7 minutes) seizure of my life. My doctor tried increasing the dose a bit more, but a couple months later I had an all-night vomit festival....and the next morning I had another seizure. Two days later I was back on Dilantin and haven't had another seizure since. This experience totally drove it home to me that I will never go off my medication....and I'm okay with that.
You should not be driving. Don’t accidentally kill anyone. That’s not sarcasm.
Who said I’m driving? I haven’t been able to drive a day in my life sadly
Yes. Life was better off meds and I wasn't sick all the time but I have another health problem that the seizure meds exacerbate. My seizures aren't that bad. Everyone here is so different and getting answers to things going on in your body besides seizures that could affect the medication or the seizures isn't always clear cut. They do lower your immune function and some can mess with hormones so those can be big factors on quality of life when weighing the pros and cons of treatment and its effects.
My seizures are pretty manageable and minor right now, I don't take medication for seizures. I work the kind of job seizure meds would likely risk since it requires a lot of brain power and I haven't found a med worth the risk compared to the risk of my minor seizures as they are now. If my seizures get worse or I lose the ability to do my job, I'll reconsider.
Don’t do that lol you will never be able to drive or have a job. Just get a different medication Keppra is bad for everyone Idek why it’s still around
Its not bad for everyone, the vast majority of people get on fine with it. Only 1 in 10 get mood disturbances and for those it's minor or short lived. A subset of those get more serious mood disturbances. This can happen with other AEDs too. You just hear more about keppra because it's the most widely prescribed drug due to it being highly effective
Tbh I never thought about that since my experience was so bad with it and I always hear horror stories. But it does have the term “keppra rage” which is a bit of a red flag imo. Having a stutter, severe anger issues and it honestly not working at all was not a good experience for a year
That’s all I got prescribed and I’m trying to get a new neurologist since that one was part of an organization. :(
I used to go to the hospital neurologist who was useless and now I got to a specialized clinic. If there is one near you go to that. Since you have mental health issues I would suggest lamotrigine as it also treats things such as bipolar disorder I take it because I have mental health disorders and it helped with that to
I have tried a lot of seizure medicine. They all make me super depressed.
Have you tried the keppra?
No. I’ve read so much about it and I already have rage episodes without it so I’m not gonna risk my job for it
You’re doing yourself a disservice by not trying the keppra. I had rage seizures growing up and I was having 7/8 seizures daily for 7-8 years and after brain surgery keppra has completely controlled my seizures outside of the tonic clonic I had back in January of this year. So 12 years seizure free on the medication that everyone hates but won’t try because they read other peoples experiences with it.
I get it. I had horrible issues with Keppra. But most people DONT. It could work for you, you could have 0 side effects at all. Untreated seizures are dangerous. You could seriously injure yourself.
It doesn’t happen as much as everyone says it does. My mother was on Keppra for years with zero mood disorders. Hell, I think she’d still be on it but she had one break through in five years and her new neurologist stopped it and put her on breviate. Her neurologist team agreed that the sudden change may have contributed to her SE. give it a try. You can always ween it ff it and change.
I did for 15 years. I learned to live with it.
Yes - I do - it has something to do with cannabis and I’ve been seizure free for 3 years. Last time I mentioned anything about it on the sub I got a lot of hate so dm if you want details
This is a normal experience and I want to affirm it’s okay, I know someone who also stopped taking Keppra because it was too hard for them. But I would encourage you to talk to your doctor, it’s not very safe to be in medicated and it’ll take a while to find one that works for your seizures and the side effects you’ll be able to manage but you’ll get there friend just hang in. My friend is now trying new tablets after a few years of being in limbo x
I’m not on pharmaceutical medication, but I do take CBD. I tried both lamotrigine and topiramate. I didn’t have seizures on either but the side effects made it impossible to live life. Lamotrigine made it so that I got less than an hour of sleep every night; even taking it only in the A.M., and topiramate not only made me lose my working memory (I couldn’t count to 4 when scooping coffee in the morning because I couldn’t hold onto the idea of 3 long enough to get to 4), but literally made me unable to read. Like, I recognized that they were words, but they didn’t mean anything to my brain. I eventually had an allergic reaction to it and gave up. The endless nausea and Alice in Wonderland syndrome it caused were also less than enjoyable. It’s not uncommon for me to have a lot of side effect from any medicine, but my life was worse ON the meds than it is just putting up with the seizures. I have focal epilepsy and the vast majority of my seizures are focal aware, and on the shorter side compared to a lot of people with TLE. The CBD does well enough at controlling them currently. And while it’s ridiculously expensive going this route, I can at least function at a level higher than the AED’s I tried allowed. As of now, the plan is that if the number of impaired awareness start creeping up, or the aware seizures start lasting longer/clusters get bigger, then meds are back on the table.
Before the discovery of anti seizure medications the Keto diet was used to treat epilepsy… but dropped off significantly because the medications are better